On Thursday Elaine had the first infusion of her next, 3rd major course of chemotherapy, a powerful combination of Avastin, Gemcitabine and Carboplatin that will be administered over the next 4.5 months. It was her 30th infusion of Avastin, a genomic drug that inhibits blood vessel growth that feeds the tumors and that has possibly been a key agent in keeping her cancer at bay. The Gemcitabine and Carboplatin are effectively poisons that we hope will push back on the advances made by the disease over the past several months. As I write this, she’s lounging on the living room couch, drifting in and out, but mostly fine. These are days to stay in and simply weather the process.
Elaine was first diagnosed with primary peritoneal cancer in late April of 2010, so we’re now approaching 46 months of living with this shape-shifting illness. Like long voyages, the daily experience is mostly unremarkable, but then there are intensely terrifying storms that strike intermittently, and then pass. You come through, shaken and wary, waiting for the next one.
One of these occurred suddenly around Thanksgiving of 2012, when we received a call from Elaine’s oncologist’s office saying her liver numbers had suddenly escalated. Her bile duct was blocked, requiring a stent. That, and a pleural effusion – a pocket of infected fluid in the lining of her lung – kept her under siege for a month. When she finally returned home from a series of hospitalizations, she was on oxygen and strong pain meds for two weeks. Nothing improved during that time and then she suddenly turned a corner.
Then in September of this year, her blood pressure (BP) spiked after her 29th Avastin infusion. Hitting a BP wall is a common problem with long term Avastin users, and Elaine had lasted far longer than most. I returned home from a trip to find her on the bed, shades drawn and eyes closed, grimacing to cope with blood pressure that had spiked to 204/102. Our understanding is that risk of stroke doubles for every 20 points of systolic (upper) pressure increases above 120, so she was roughly at a 16-fold increased threat. That episode also resulted in a hospitalization, followed by a more aggressive effort to keep her BP within tolerable limits.
Even so, its important to keep in mind that, for the better part of the past year, Elaine’s been in reasonably good health and high spirits, with few limitations. Granted, she’s very careful about what she eats and focuses on remaining fit. She’s been a very successful patient while going through this process.
And its a process that, by any definition, has been relentless, something we’ve come to realize that few people really appreciate. When she was first diagnosed, our good friend Larry Heifetz, a medical oncologist, cautioned us that this would be a marathon rather than a sprint. He was right. With few interruptions, Elaine has been in near-constant treatment for the past 4 years, and at some point it’s exhausting. Steve Buckley, her experienced and wise oncologist, saw it clearly after the BP upheaval in September, and counseled her that, at some point, even the most diligent patients need a break from treatment to optimize the quality of their remaining lives.
Through all this, Elaine has never complained or been self-pitying. She is upbeat, engaged and productive. Her output of increasingly marvelous paintings has been prodigious, and she has thrown herself into them with a passion that is wondrous to behold. I’ve attached a few recent ones.
Not all is well. She tires easily with a short walk, or from climbing the stairs to my office. She feels pressure in her abdomen from the fluid buildup. We talk constantly and openly about the inevitabilities, remembering that most women with her type of cancer are gone within 5 years of diagnosis.
Through all this, we’ve enjoyed the overwhelming support of Elaine’s brothers and sisters, our neighbors and our wider circles of friends. Everyone has been willing, at the drop of a hat, to help, no questions asked. These kinds of favors instill deep gratitude and are impossible to repay. We are very fortunate indeed.
We are closer than ever, and every day is precious. There are few regrets. We’re still having a “swell” time together, as one of her relatives once quipped, and she remains the person I know who has most lived life to its fullest.